Health care provider experiences delivering dementia care in Indigenous communities: challenges and recommendations

Abstract

Background and Objectives

Little is known regarding the effects of Alzheimer’s disease and related dementias (AD/ADRD) in American Indian and First Nation (AI/FN) communities in the United States and Canada. Yet, research suggests FN populations in Canada experience 34% higher dementia rates, and over half of US-based Indigenous adults demonstrate incident cognitive impairment, including dementia due to AD and/or cerebrovascular disease. Already higher than the general population, rates will increase as Indigenous populations age. The Indigenous Cultural Understandings of ADRD-Research and Engagement project was established to understand lived experiences of dementia in AI/FN communities around the Great Lakes. We report themes describing practitioner experiences providing dementia care in selected US and Canadian Indigenous communities.

Research Design and Methods

Healthcare practitioners (n = 14) providing care in Indigenous communities were interviewed by community-based researchers using semi-structured guides exploring a range of topics. Thematic analysis was used to identify challenges and recommendations to improve care. Trustworthiness checks included reflexivity, consensus, prolonged engagement, member checking, and audit.

Results

Thematic analysis yielded 6 superordinate themes. Provider-perceived challenges included: (1) Limited Resources for Providing Dementia Care, (2) Need for Caregiver-focused Preparation and Support, (3) Communication and Relationship Gaps, (4) Low-levels of Community Dementia-related Awareness, Education and Engagement. Provider recommendations were characterized as: (5) Increase Dementia-related Awareness, Education and Engagement, (6) Invest in Dementia Caregiver Support and Community Strengths.

Discussion and Implications

Findings were contextualized with post-colonial and relational care frameworks. Providers described relevant challenges and provided culturally safe and equitable strategies to improve dementia care outcomes.

Background and objectives

By 2050, dementia cases in North America, including those caused by Alzheimer’s disease and related dementias (AD/ADRD), are expected to increase by 100%–123% from cases tracked in 2019 (Nichols et al., 2022). Correspondingly, care for persons living with dementia represents a growing need. For under-resourced healthcare settings, the challenges are multifaceted. These challenges may be further intensified for Indigenous individuals, many of whom live in areas where healthcare systems are under-resourced, geographically distant, fragmented across multiple jurisdictions, and exacerbated by complex insurance structures.

Adding urgency to these challenges, North American Indigenous populations, including American Indian and First Nations (AI/FN) communities in the United States and Canada, are among the most affected. Recent estimates indicate that 54% of Indigenous individuals in the United States aged 65 and older exhibit a cognitive syndrome, including mild cognitive impairment (MCI) and dementia (Suchy‐Dicey et al., 2024). As life expectancy continues to increase among Indigenous populations in Canada and the United States, the projected prevalence and incidence of dementia are expected to rise accordingly (Jacklin et al., 2013; Kornblith et al., 2022; Suchy‐Dicey et al., 2024; Warren et al., 2015). Previous work (Johnson et al., 2023) estimated the incremental costs of healthcare added by a diagnosis of AD/ADRD for Indigenous patients in the United States to range from $880.45 million to $1.91 billion annually. Altogether, these data highlight the substantial and growing human and economic weight of AD/ADRD for Indigenous communities across North America.

Indigenous communities face a unique confluence of challenges that impact the delivery and efficacy of dementia care. Acknowledged challenges include culturally unsafe practices, systemic bias, discrimination (Browne et al., 2017; Darroch et al., 2017), and a legacy of mistrust rooted in colonization and Western-centered healthcare systems (Browne et al., 2017; Jacklin et al., 2017; Kirmayer et al., 2014). If not addressed, the challenges are likely to compound health disparities experienced by Indigenous people living with dementia.

The Indigenous Cultural Understandings of Alzheimer’s Disease and Related Dementias—Research and Engagement (ICARE) project was supported by a National Institutes of Health (NIH) grant (R56AG062307) and is based in the United States. The project was established in partnership with four diverse AI/FN communities situated in the Great Lakes Region of the United States and Canada, with a goal to explore the impact of dementia in Indigenous communities. Establishing strong relationships with communities and Community Advisory Groups (CAGs) was the first objective, providing a necessary foundation for subsequent aims, which included exploring cultural understandings and experiences of dementia in the community context. Toward this goal, key informant interviews were conducted with Traditional Knowledge Carriers and healthcare providers serving Indigenous communities.

Some research exists exploring Indigenous healthcare and patient-provider relationships from the providers’ perspectives (Crowshoe et al., 2018; Simonds et al., 2011); however, literature specific to providers’ experiences with dementia care is negligible. This paper reports thematic outcomes in healthcare provider interviews regarding challenges and recommendations to optimize care. Consistent with phenomenological approaches to qualitative data analysis, no a priori hypothesis was proposed. Presented here are results of thematic analysis of data guided by the following research question: What challenges do healthcare providers experience when providing dementia care within Indigenous communities, and what are their recommendations for improvement? Results were contextualized through a postcolonial lens, with attention given to healthcare landscapes of Canada and the United States.

Research design and methods

Ethical issues pertaining to human subjects

The ICARE study was approved by the University of Minnesota Ethics Board (IRB ID: STUDY00005341), the University of Wisconsin Health Sciences Minimal Risk Institutional Review Board (IRB ID: 2019-0113), Manitoulin Anishinaabek Research Review Committee (Certificate #2019-09), and was supported by Tribal council resolutions or motions of support in each partnering community.

Research team and approach

The ICARE project employs a multidisciplinary approach, integrating knowledge from different disciplinary backgrounds, including medical anthropology, Indigenous studies, neuropsychology, and Indigenous communities, building multiple perspectives into data collection and analysis. A unique feature of ICARE is the “second generation” Community-Based Participatory Research (CBPR) methodology, which prioritizes capacity-building and builds upon long-established relationships between Indigenous communities and researchers to train new generations of Indigenous community-researchers (Blind et al., 2023). As such, community members at each site were carefully selected and trained in key dementia topics and qualitative methodologies. Community-based researchers (CBRs) and CAGs reviewed the interview guides for cultural relevance. CAGs in each participating community offered guidance throughout the research process. These CBPR design features were instrumental in fostering trust between researchers, Indigenous participants, and communities (Wallerstein et al., 2017).

Collaborating communities

The ICARE project is an extension of emerging and long-term research partnerships with Indigenous communities in the Great Lakes Region of the United States and Canada. Of the four partnering sites, three are in the United States and one in Canada. Sites were selected based on established research relationships and community-expressed concerns regarding the impact of dementia in Indigenous communities. Project design and implementation were guided by community input, as is consistent with CBPR methodology.

While commonalities exist across sites, there is significant variation in culture, context, geography, rurality, and population density across partnering communities. For example, the four sites varied in degree of rurality. US sites were classified using the rural–urban commuting area (RUCA) scores ranging from 2 (“metro/high commuting”) to 10 (“isolated rural area”) (USDA Economic Research Service, 2025). For the Canadian site, census data from 2021 describe the locale as remote to very remote, with Remoteness Indices (RI) ranging from 0.398 to 0.643 (Alasia et al., 2017; Statistics Canada, 2023). In all sites, Tribes/Nations provide healthcare to their citizens. However, the degree to which healthcare was also offered by secondary or tertiary sources from non-Tribal health systems varied between sites, with the Canadian site uniquely embedded within a nationalized healthcare system. None of the sites had on-reserve/on-reservation access to specialty diagnostic services. Likewise, the degree to which national and local governmental resources were available also diverged between US states and between the two countries.

Theoretical framework and methodological orientation

The ICARE study is developing an ethnographic database theoretically grounded in interpretive phenomenology (Johnson, 2016; McGovern, 2017) overlaid with a health equity and structural violence framework (Farmer et al., 2016), also known as the “postcolonial lens,” which emphasizes the importance of cultural context surrounding definitions of health and beliefs on how healthcare should be delivered (Browne et al., 2005). ICARE used an ethnographic approach (LeCompte, 2010; Schensul & LeCompte, 2012) guided by tenets of Indigenous CBPR (Christopher et al., 2011) and Two-Eyed Seeing/Etuaptmumk (Bartlett et al., 2012), prioritizing Indigenous community engagement and integrating Indigenous knowledge in each phase of the study protocol. In this paper, we draw on ICARE data concerning experiences of providers who care for Indigenous people experiencing dementia.

Participant selection and recruitment

CBRs in each site recruited participants through purposive, convenience, and snowball sampling methods. During recruitment, CBRs worked with local health centers and CAGs to identify professionals who work with Indigenous people experiencing dementia. CBRs provided a brief letter of information describing the study and communicated with potential participants through email or phone (n = 14). Participants were compensated $75 per interview, unless prohibited from doing so by their employer.

Data collection

Data were collected between 2018 and 2021. Due to COVID-19-related restrictions, CBRs interviewed providers using a secure Zoom video platform and in settings deemed safe and confidential by CBRs and providers. Typically, providers were interviewed in a single session in their workplace, such as a private clinical setting. Interview length ranged from approximately 20 to 60 min, with the average interview lasting roughly 40 min. Semi-structured interview guides focused on how healthcare providers characterized their practice and their experiences providing dementia care for individuals identifying with and residing in Indigenous communities. Interviews were audio-recorded and transcribed verbatim by a third-party service. Transcripts were reviewed to ensure that identifying information was omitted and assigned a de-identified code. The transcripts were reviewed by CBRs and member-checked by participants to ensure accuracy.

Data analysis

Transcripts were entered, stored, organized, and coded using the qualitative data software package NVivo (QSR International, 2020). A codebook was developed through iterative consultation among project leads, the data analyst team, and CBRs. The group began with a deductive approach guided by our theory and frameworks. This was followed by an inductive component where the team reviewed a sample of data to identify new concepts, which were used alongside the guiding research questions to inform a coding framework and code definitions. Additions and alterations to the coding framework were reviewed and approved by the larger analytic group.

Approximately 30% of transcripts were double-coded. Inter-coder reliability (ICR) was assessed using Cohen’s Kappa. A minimum Kappa score of 0.75 was considered acceptable agreement between coders (Burla et al., 2008). Any statements with a Kappa score less than 0.75 were reviewed by coders, discussed, and resolved. In the event coders could not reach agreement, the excerpt was brought to a third party (CBRs and/or project leads) for a decision.

The present thematic analysis was conducted manually and focused on interviews with community healthcare providers. The analysis mirrored the approach taken to develop the codebook, combining deductive and inductive approaches. Specifically, authors NL and CG analyzed provider narratives situated under two overarching categorizations in the existing codebook: (a) Barriers to care, and (b) Recommendations to improve dementia care. The research question was derived from these categorizations along with ICARE aims and opened possibilities to inductively explore themes within these groupings.

Phases of thematic analysis, as described by others (Braun & Clarke, 2006), guided the analysis process in this study. Key themes were identified both in relation to the research question at hand and thematic patterns occurring within and across sites. The process relied on iterative feedback and consensus throughout; frequent meetings allowed researchers to discuss observations and challenge assumptions. Given the practical aims of this study, a semantic analytical approach allowed researchers to identify thematic trends and later situate and interpret findings within a larger context of literature.

NL and CG first independently read and reread all provider narratives categorized under barriers to care and recommendations to improve dementia care in the initial codebook to familiarize and immerse themselves in the data. They noted initial impressions, met for discussion, and independently generated codes and notes. After discussing initial codes, discrepancies, and patterns observed in the data, NL and CG collated observations into a table format, which was stored on a HIPAA-compliant cloud-based platform. The table allowed NL and CG to collaboratively share ideas and visualize how codes may be organized into overarching themes and subthemes. NL and CG expanded the table to include theme descriptions, notes relevant to provider experiences, and potential relationships amongst themes. They met regularly for consensus, and when analysis reached a point where refinements did not yield significant changes, the analysis was presented to the ICARE team for review. NL and CG integrated team feedback and continued meeting regularly to discuss rationale for adjustments. NL and CG reached consensus on revisions and brought the table to the ICARE team for audit and final consensus.

Trustworthiness

Several measures were built into the study design to ensure trustworthiness of the dataset, including reflexivity, prolonged engagement, triangulation, audit, and member checking (Glesne, 2011). These measures were selected intentionally with respect to the historical context of Indigenous communities. For example, member checking techniques (e.g., reviewing transcripts with participants, reviewing outcomes with partnering communities) served to enhance data integrity by ensuring accuracy and increasing community engagement, capacity, and trust. CAGs at each site were an integral part of member checking, and they guided every step of the research process to ensure cultural safety, relevance, and accuracy of data collection, analysis, outcomes, and dissemination.

Results

Demographic characteristics

A multi-community sample of 14 healthcare providers with diverse professional backgrounds participated in interviews (Table 1), reporting an average of 16 years of professional experience (M = 15.9, SD = 11.7). Provider roles and specialties included: physician, registered nurse, geriatrician, geriatric neuropsychiatrist, social worker, geriatric home care specialist, cardiologist, and dementia care specialist. Two providers (14%) identified as Indigenous, and eight (57.1%) identified as female or woman. To help contextualize reach and access, information regarding average provider density nationally and in partnering communities is available in Table S1. Briefly, one site’s provider-to-patient ratio was approximately half the national average. Two sites were around the national average, and one was higher.

Table 1.

Sample characteristics (n = 14).

Participant code	Gender identity	Location of practice	Title/specialty/role	Length of time (years) in role	Indigenous ethnicity
P01	Female	United States	Social worker	2	No
P02	Male	United States	Cardiology	2	No
P03	Woman	United States	Family physician	23	No
P04	Woman	United States	Registered nurse	13	Yes
P05	Woman	United States	Registered nurse	3	No
P06	Male	United States	Family physician	28	No
P07	Male	United States	Physician	30	No
P08	Female	Canada	Geriatric psychiatrist	14	No
P09	Male	Canada	Family physician	27	No
P10	Female	Canada	Family physician	15	No
P11	Man	Canada	Geriatrician	30	No
P12	Male	Canada	Geriatric home care provider	29	No
P13	Female	United States	Registered nurse	2	Yes
P14	Female	United States	Dementia care specialist	5	No

Thematic outcomes

Results indicated six superordinate themes in total (Table 2). Provider-perceived challenges were characterized by (1) Limited Resources for Providing Dementia Care, (2) Need for Caregiver-focused preparation and support, (3) Communication and Relationship Gaps, and (4) Providers Perceived Low-levels of Community Dementia-related Awareness, Education and Engagement. Provider recommendations yielded two overarching themes: (5) Increase Dementia-related Awareness, Education and Engagement, and (6) Invest in Dementia Caregiver Support and Community Strengths. We elaborate upon each superordinate theme and subthemes in the sections below.

Table 2.

Themes and illustrative quotes representing provider-perceived challenges and recommendations for dementia care in Indigenous communities.

Theme	Subtheme	Supporting quotes
Challenges
Limited resources for providing dementia care	Health care system level	“We could still be growing right now, but we’re kinda like plateaued with the staff that we have right now, but, I mean even dementia education, if there was more resources, it would help the community” (P01).
	Community level	“first thing I think of is the lack of resources on the reservation, for education and, and like you know, even our services” (P01).
	Travel and logistics	“…being isolated in a small community so having to travel a few hours away to get any specialty help for dementia or any other comorbidities that they might have” (P05).
Need for caregiver-focused preparation and support	Caregiver preparedness and capacity	“…most of the barriers are just not having the capacity to do as much as they want to do” (P10).
	Caregiver support	“…we don’t have a lot of Respite Care providers, if any, in the area” (P01).
Communication and relationship gaps	Between providers and across health care systems	“The care is so siloed with… the different healthcare organizations” (P10).
	Building relationships with patients and supports	“…a common challenge is that… because there is a little bit of resistance, a little bit of non-acceptance which is common, you know in any family, in any culture … right off the bat, they say no, we don’t need treatment” (P08).
Providers perceived low levels of dementia-related community awareness, education, and engagement		“Every time I think I’ve got it figured out all of a sudden someone will say something to me like, ‘Oh, [name] is the dementia care specialist?’ I didn’t know we had one” (P14).
Recommendations
Increased dementia-related education, awareness, and engagement		“But, just trying to figure out a way to get that education back to folks because I feel we’re gonna lose ground if we don’t do something” (P14).
Invest in dementia-related caregiver support and community strengths	Develop and implement caregiver-specific interventions	“… more caregiver support to give the caregiver a break, I know caregiver burnout is high” (P04).
	Invest in community strengths and resources	“…a lot of our community health workers that go out into the homes… are tribally enrolled… there’s quite a few” (P14).
	Culturally tailored approaches to providing care	“Where we really need to look beyond our own selves and really look to become more community-minded… It’s important to look out for yourself, but it’s also, I would say, equally important to look out for your community” (P06).

Challenges to providing dementia care in Indigenous communities

Challenge—Theme 1. Limited resources for providing dementia care

While communities differed in resources, cultural contexts, and geographic factors, providers across all sites consistently described dementia care resources as profoundly limited. Providers illustrated a complex interplay between limited dementia care resources and systemic inequities, such as poverty and high rates of chronic comorbidities, that further undermine health in Indigenous communities. Dementia-specific resources were described as including access to specialty geriatric services and/or cognitive testing, access to AD/ADRD-related education, caregiver support, and adequate staffing. Resources were categorized under the following three subthemes: (1.1) Healthcare System Level, (1.2) Community Level, and (1.3) Travel and Logistics.

Subtheme 1.1: health care system level

Providers described challenges in the healthcare system due to limited resources at multiple levels, including staffing shortages, financial/insurance constraints, and inadequate infrastructure to meet patients’ needs. Quotations provided in Table 3 describe the lack of continuity and disruption in care resulting from limited human resources. Likewise, providers acknowledged a lack of dementia-specific services, such as AD/ADRD geriatric specialty and diagnostic services. Finally, providers described an infrastructure with few options to meet the needs of people experiencing dementia in their communities. This lack of resources has far-reaching effects, as P14 observed:

Table 3.

Provider quotations describing challenges related to limited resources.

Nature of resource challenge	Quotation
Human resources	“Staffing for healthcare services on [clinic location] has been problematic. I mean, there’s been a dramatic turnover of nursing over the past seven or five, six years, and that’s why I don’t know anybody who’s coming up anymore” (P10).
	“We could be meeting a lot more people and having more clients if we were bigger and had more people and more resources” (P01).
Dementia-specific services	“It seems to be very hard to find a speech language pathologist here… you don’t seem to be able to access a speech language pathologist that mostly they’ll deal with dysphagia” (P11).
	“…there’s very limited geriatric specialty availability” (P12).
Supportive infrastructure	“…the sad reality in [home county] is that we don’t have Assisted Living for anybody, so placement often involves talking about getting on the wait list” (P03).

When they find out that they can’t have it because it’s just something that we don’t offer, you know, like a day service, or a place to live, or a placement in a nursing home or whatever it is, they almost go into a shutdown.

Subtheme 1.2: community level

Other resource challenges were specific to the unique contexts of Indigenous communities, including on-reservation settings, where resource scarcity often intersects with high levels of baseline need. As P10 stated, “…many people have their own health and family issues, mental health issues. Poverty is huge. It’s, uh, there’s just not a lot of money to, to do some of the things that would make, make life easier.”

Interestingly, providers made connections between resource availability and modifiable social determinants of health. One provider discussed chronic disease risk factors for AD/ADRD, and conceptualized lack of financial resources as a chronic comorbidity:

Diabetes, high blood pressure, high cholesterol, chemical dependency… you’ve got all those things, but I think one thing that is… again, this is somewhat of a generalization, but they have less financial resources to tap into, to get some of the things that you might need. I think that’s a big comorbidity, is not having the financial resources to help navigate. (P06)

Providers viewed community-based resources as particularly beneficial (e.g., home health, delivered meals), although access to these services varied across communities. For example, as one provider (P10) explained: “I’ve been really happy in [community], there’s just lots of support for meals, for housekeeping that my patients out of [community] they don’t have access to those sort of services.”

Another provider described disparities between services offered through the Tribe and those available to the broader, non-Tribal population. Even though people living on-reservation may have access to nearby services off-reservation, they would prefer to receive services offered by the Tribe:

Like, if you’re in the general population you get a lot of, you have a lot of services depending on where you live. But there’s a lot of services in [County]…counties all over the state that are not geared, that are not given by tribes. And so I think that’s something that I do get that sometimes. “Oh, you mean the tribe won’t, doesn’t do that?” And I’m like, “No. But I can give you a number.” And they’re not always willing to go ahead and do that. (P14)

Subtheme 1.3: travel and logistics

Providers working in multiple and primarily rural communities noted significant variation in the degree of rurality and proximity of healthcare resources across communities. Still, logistical and transportation challenges emerged as a consistent theme in terms of access. While some resources like access to traditional medicines may be available, they were often geographically dispersed. For example, “Just trying to get there. I mean, we can get in pretty much fairly quickly to services in [place], but transportation poses a problem” (P04). Limited service availability presented additional challenges for caregiving and access to geriatric healthcare: “And there’s almost no neurologist availability and to go and see somebody like that, that’s 90 miles away, or 120 km away, that’s a pretty big challenge for somebody and their elderly partner” (P12). Transportation and travel-related concerns were described as exacerbating the already complex and demanding daily realities faced by people experiencing dementia. As P06 illustrated:

It takes 45 minutes to come in to get groceries. If you don’t have respite care, like he [a family caregiver] can’t even come get groceries, can’t come do your banking. So, if you’re the one family member who has capacity to take care of someone, you might, that might be it. So, our geographical barriers, the fact that there’s, human resources available can be challenged because of many people have their own health and family issues, mental health issues.

Challenge—Theme 2. Need for caregiver-focused preparation and support

AD/ADRD-related care and social support are critical resources necessary for people with dementia to live outside a skilled nursing facility. Providers described complex, systemic challenges to dementia care that were unlikely to be remedied by financial resources alone. Generally, providers characterized family members as primary caregivers with a desire to help their loved ones living with dementia as much as possible. However, providers felt that caregivers did not have the necessary AD/ADRD-specific preparation and support. This overarching theme included two subthemes: (2.1) Caregiver Preparedness and Capacity, and (2.2) Caregiver Support. Narratives illustrate practical ways in which providers observed the intertwining and compounding of resource scarcity and social determinants of health within the context of dementia care. Moreover, subthemes were distinct yet related, in that providers attempted to provide support by engaging in conversations regarding available resources, care options, and next steps.

Subtheme 2.1: caregiver preparedness and capacity

Providers discussed with caregivers how to plan for future changes in levels of care, including acknowledging that the caregiver will have a limit: “I have a very serious conversation with caretakers about where is your… what I refer to as their line. What is the level of symptoms or care that this person needs that’s more than you can do?” (P03). Providers observed that while caregivers are well-meaning, they can become overwhelmed, especially as care needs became more complex: “…barriers would be the exhaustion and the burden… especially as the caregivers themselves get older and… the chronic diseases [of the person with dementia] are hard to manage” (P13).

Providers also recognized community values of caring for loved ones in-home for as long as possible. However, in-home care poses new challenges, particularly as AD/ADRD advances, as P04 explained:

When people lose the ability to transfer or walk. I mean, most caretakers can’t physically manage all that by themselves. Or their [person with dementia] nights and days are so messed up that nobody’s getting any sleep and the caretaker is just… [at their limit].

Caregiver preparedness and capacity was also perceived to be affected by the caregiver’s personal context, as one provider acknowledged, “It’s just engagement and actually doing something about it [Elder’s care needs] that’s sometimes difficult. Part of that is, many people there are struggling with their own issues, their own health and mental health issues” (P10).

Subtheme 2.2: caregiver support

Caregiver support was closely tied to preparedness and capacity. Providers noted caregiver burnout became a salient concern when demands exceeded available support. Providers attempted to support caregivers by drawing attention to caregiver needs:

People who try to take care of these loved ones at home. I got to the point where I was pretty blunt with the caregiver. I said, “What good are you doing your family if you are so run down that pretty soon you’re in as bad shape as the person you’re taking care of?” (P07)

In this way, respite was seen as a much-needed, but limited, resource: “Getting respite care has been actually quite a big challenge and [would] be something that could be improved” (P10). Additionally, although family members were reported to be key sources of support, geographical distance, interpersonal disagreements, and uncertainty about roles disrupted care:

What I’ve often seen in the past is there’s one… The daughter lives close by and is doing a lot of the caregiving, and the son who lives [distant from family] is criticizing what’s going on and doesn’t think there’s anything [wrong] with mom or dad. (P06)

Challenge—Theme 3. Communication and relationship gaps

Subthemes nested under Communication and Relationship Gaps included: (3.1) Communication Between Providers and Across Healthcare Systems, and (3.2) Building Relationships with Patients and Supports. Across subthemes, providers described how interruptions in communication and relationship building can negatively impact the quality of dementia care. Connections with other themes were noted. For example, an environment with limited resources may overwhelm providers and systems, resulting in slowed or disrupted communication.

Subtheme 3.1: communication between providers and across health care systems

Providers, primarily in Canada, reported difficulties with care coordination across fragmented healthcare systems. Confusion regarding responsibilities and roles was also noted; for example, discerning who is on the patient’s care team or who the primary provider is: “It’s just not a lot of communication, and sometimes… I wonder if there is a difference of opinion on who’s the most responsible healthcare provider” (P10).

Communication between providers was connected to other themes, such as under-resourcing and staffing turnover: “So it’s part of a bigger problem is that there is poor communication. Again, it is also suffered from some turnover” (P10). Providers described siloed care systems, making it difficult to maintain a comprehensive view of patient needs and to coordinate care. Moreover, electronic medical record (EMR) systems were not sufficiently integrated: “We are not on the same EMR … they write a note… I have none of that communication, and they don’t get communication from me unless I actually write an email and send it on” (P10). Difficulty coordinating care across systems that hold different policies and resources (e.g., coordination between providers on and off reserve) was also noted, resulting in unanswered questions such as: “Who to refer to, how, what resources do we have, who’s allowed to come onto the reserve and provide healthcare…” (P12).

Subtheme 3.2: building relationships with patients and supports

Challenges associated with building relationships between providers, people experiencing dementia, and their loved ones represented a complex subtheme. Providers explained challenges spanning across multiple cultural contexts, identities, worldviews, lived experiences, languages, practices, values, and beliefs. Several non-Indigenous providers reflected on how their racial and gender identities may affect their relationships with Indigenous patients and communities: “…last thing Native cultures need is one more old white guy telling them how to do things, right?” (P06) and “When I come up here, I bring my white girl stuff with me and I am culturally blind sometimes” (P03). Another complex concern providers raised involved tensions–some of which were internal–between traditional and Western biomedical approaches to care:

I’ll be honest, we did have a traditional healer… we had some of my patients going to see him who would tell them to stop their chemotherapy because they [the traditional healer] can fix their cancer. And I had a real issue with that. (P10)

Challenge—Theme 4. Providers perceived low-levels of dementia-related community awareness, education, and engagement

Notably, this theme surfaced across discussions of both challenges and potential solutions. Lack of awareness or open discussion was associated with access to resources. For example, “You know, you, you need to be able to access or ask for help or access services. Sometimes I wonder if people aren’t coming to get help because they don’t know that there’s help to be had” (P10). Providers also discussed fears around dementia diagnoses and thought a lack of AD/ADRD awareness may affect how people understand dementia. In turn, this influenced the openness of discussions about AD/ADRD. Hesitancy to openly discuss AD/ADRD was thought to contribute to social isolation, reduced awareness, and reduced utilization of available services, as P14 observed:

People who have dementia I think they go almost underground, they don’t want other people to know. So they’re not getting that support, that meal that would be so helpful, or someone coming and maybe picking up your mail for you or running to the grocery store. Those things just aren’t happening, [because the person with dementia doesn’t reveal their condition].

Recommendations to providing dementia care in Indigenous communities

Recommendations—Theme 5. Increase dementia-related awareness, education, and engagement

This theme reflects provider recommendations emphasizing the need to raise community awareness about AD/ADRD, and to create opportunities for ongoing provider education and engagement. Providers stressed the importance of fostering open dialogue about AD/ADRD, noting that these discussions can validate lived experiences and help reduce stigma. Community education was seen as an effective strategy for initiating discussions and raising awareness. For example, “…some people who have received education talk about it real openly, and some who have not had any education about it, don’t wanna talk about it or even have it brought up if it is a case” (P01).

Recommended topics for community education and outreach included AD/ADRD symptoms, risk factors, prevention, and caregiver support. Engagement and continued learning between providers through research were also suggested “…we could have someone from [research team] come and speak, to the community or even us [providers]… someone that works with it [dementia] every day” (P04). Similarly, another provider suggested “…you [research team] are in a position to see and to understand a bit better than I do, where the gaps are and how we can improve that” (P10). Such interventions could provide opportunities for engagement between providers, “I would love if we could have more interaction and more communication. I think it would benefit everybody and it’s just time. I mean, we’re all very busy and we don’t have an easy way to connect” (P10).

Recommendations—Theme 6. Invest in dementia caregiver support and community strengths

Analyses revealed three subthemes linked to this theme: Recommendations to (6.1) Develop and Implement Caregiver Specific Interventions, (6.2) Invest in Existing Community Strengths and Resources, and (6.3) Culturally Tailored Approaches to Providing Care.

Subtheme 6.1: develop and implement caregiver-specific interventions

Providers highlighted existing caregiver programs, like family caregiver stipends and providing respite, that could be expanded along with adult day centers and assisted living: “Respite is a big, needed service, and the other huge need that we have is for assisted living options here. There are none” (P01). It is important to note that resources varied across communities, thereby informing provider recommendations. For example, some providers pointed to respite as a significant support, noting resources are available: “I would say that they get a little bit overwhelmed and exhausted, at times. They just need to have a break, and there are programs out there, too, that offer respite care” (P13). Of note, it was unclear whether such programs were accessed and available on and/or off reserve. Overall, providers noted the importance of focusing on caregiver support to optimize dementia care: “…if we really want to put our money where the need is, that is really where the need is to really support not only the patients, but the family members and friends and caregivers” (P06).

Subtheme 6.2: invest in existing community strengths and resources

Provider narratives reflected a positive view of existing community-based resources and acknowledged community values (e.g., respecting Elders, reciprocity, relational care in community) as important strengths. For example, “We don’t have a lot of services, but what we do have is a lot of community people who do care and are very invested in their community. I think that’s a tremendous asset” (P06). Providers emphasized that effective dementia care must build on the strengths, values and capabilities already present in Indigenous communities. One provider additionally remarked that people experiencing dementia often preferred to access services provided by the Tribe, rather than external agencies: “I just really feel that they really want services from the Tribe” (P14).

Subtheme 6.3: culturally tailored approaches to providing care

Related to investing in community strengths, providers recognized the importance of the collectivistic worldviews, traditional practices, and cultural tailoring in dementia care planning and communication. They also acknowledged the need to create and use culturally adapted AD/ADRD assessment tools. One provider (P06) reframed aging through a cultural lens:

Rather than looking at them as a burden, looking at elder people as a resource, and that they have value on our community. Once we … the value isn’t how much money they’re making. It’s the experience and the life experience they have to offer us.

Another provider reflected critically on Western frameworks, suggesting that we incorporate Indigenous conceptualizations of dementia:

From a medical, Western medical perspective, we’re fixated on memory… but maybe there’s a better way to talk about it. We’re describing the same things, but because we’re not using the same words… it was just a big light bulb moment as it’s like, oh, I think maybe we could try using different language [when talking about dementia] and see what happens. (P10)

Providers also expressed concern that making adaptations to current AD/ADRD assessment tools without validating instruments with Indigenous populations would affect diagnostic accuracy or meaning: “I’ve never tried [to modify the test] because I just don’t think I’d be able to standardize it in a meaningful way. Because what, what would a score mean then?” (P10). At the same time, providers acknowledged the need for more culturally relevant assessment tools; for example, “I have felt a need to modify it [testing] sometimes” (P01).

Discussion and implications

Providers interviewed in the ICARE project were asked to describe challenges they have experienced in caring for their Indigenous patients with dementia, as well as their recommendations for improving dementia care. In general, they described disparities in healthcare access and quality. Some of these challenges align with those experienced by other populations residing in rural areas, including geographic isolation and limited availability of specialized services (Constantinescu et al., 2018). Providers also observed that health services are underfunded in Indigenous communities and discussed resource limitations broadly, either as a challenge (e.g., lack of resources) or as a recommendation to improve care (e.g., invest in providing resources). We summarize findings as either generalizable or unique to Indigenous communities, offering a contextualized review of provider recommendations.

Generalizable challenges

Providers noted several challenges related to geographic isolation. This is consistent with findings from other studies, including one conducted with providers caring for Indigenous populations in Australia (Bryant et al., 2021), and Canadian providers caring for non-Indigenous people with dementia in rural settings (Constantinescu et al., 2018). In addition to noting the logistical challenge created by the need to travel a substantial distance for healthcare, providers in this study observed that time scarcity created by travel demands added an additional burden.

Provider reports in our project, however, diverged from previous data in an important aspect: they did not cite their own lack of training as a challenge (Lee et al., 2020). Prior work with providers reported lack of confidence in their ability to accurately diagnose as a barrier to care (Pimlott et al., 2009). Our findings may reflect secular trends in medical education, with more recently trained providers being better prepared to recognize and treat dementia. For example, in the United States, focused efforts resulting from the National Plan to Address Alzheimer’s (U.S. Department of Health and Human Services, 2024) have led to substantial investments in dementia training for the geriatric workforce. It is possible that increased attention in medical education has resulted in medical provider teams who feel more prepared to care for people living with dementia.

Providers here focused largely on systemic issues as challenges to providing care, which can occur across multiple settings and populations. In this sample, Canadian providers spoke of communication gaps between providers and health care systems, including siloed care and incompatible EMR systems. This emphasis on system-level challenges may reflect geography or broader structural shifts in healthcare, such as those resulting from the COVID-19 pandemic (Cutler, 2023). Differences related to the US model of healthcare as a business enterprise (Galea & van Schalkwyk, 2023), as opposed to national healthcare in Canada, could also be at play. Interestingly, providers from an urban, metropolitan area acknowledged that dementia was more challenging to manage than conditions like diabetes in their healthcare system, even when they believed their healthcare system had the resources available to manage care for people with dementia (Harris et al., 2009). It follows that providers working in under-resourced rural healthcare systems would be acutely aware of systemic challenges in managing the complexities of dementia care.

On the other hand, dementia-specific resources were acknowledged to vary across settings. Although providers did not offer detailed comparisons, those who worked in multiple settings observed that some communities appeared to have more resources than others. However, it was difficult to discern from the data why this might be, and whether services were equally accessible on- versus off-reservation. Still, the data reflected perceptions that more services are available for the general population off-reservation, and increasing on-reservation services tailored for Indigenous communities would decrease challenges to access and care.

Challenges unique to Indigenous populations

Addressing the above challenges takes on added urgency given evidence suggesting Indigenous populations in the United States and Canada disproportionately experience hardships associated with dementia. As noted, providers expressed an opinion that Tribal healthcare resources were more limited than in other settings. This may reflect a greater need for services for Indigenous populations compared to other groups. Data from one of the few population-based studies attempting to characterize the impact of dementia for American Indians suggest that over half of US-based Indigenous individuals experience late-life cognitive impairment after the age of 65 (Suchy‐Dicey et al., 2024). Additionally, Indigenous populations often face unique health challenges that intersect with dementia, including higher rates of chronic diseases and mental health disorders that impact overall health management (National Collaborating Centre for Indigenous Health, 2013).

Challenges in providing healthcare may be exacerbated in the United States, where non-nationalized healthcare is expensive and often inaccessible for the underinsured (Collins et al., 2019). For example, in the United States, the National Indian Health Board (NHIB) set forth key advocacy priorities for 2025–2026 that include: fully funding IHS’s requested budget, addressing inadequate healthcare infrastructure, addressing workforce shortages, mandating funding protection from budget cuts, and advancing funding to IHS that sustains operations (NHIB, 2025). Therefore, chronic health conditions are co-occurring in a landscape where fulfilling federal commitments to Indigenous healthcare remains an ongoing challenge.

Providers in this study discussed the association of the socioeconomic strains that Indigenous people with dementia and their families face with the onset and progression of dementia. Various stressors experienced by Indigenous people contribute to chronic comorbidities, such as diabetes and high blood pressure, which in turn increase dementia risk.

An emerging body of evidence supports a novel public health approach to mitigate health disparities in under-resourced populations by addressing socioeconomic challenges–specifically, providing unconditional cash transfers (UCTs) such as what was done through the Child Support Grant program implemented in South Africa. The program simply provided cash transfers to qualifying primary caregivers of children (Agüero et al., 2006). These data, and those of others, suggest a compelling effect of unconditional cash transfers on improved health outcomes (Pega et al., 2022). Direct and combined impacts of UCTs may reduce psychosocial stress and improve self-efficacy, thereby reducing the risk of chronic health conditions (Pega et al., 2022). Moreover, UCTs may provide a non-paternalistic approach to break cycles of intergenerational poverty and its cascading effects on health (Agüero et al., 2006).

Still, providers in this study noted they did not believe it was financial needs alone that should be addressed. An important factor in dementia care is the historical and ongoing impact of colonialism, which has disrupted Indigenous ways of life and undermined traditional health practices (Truth and Reconciliation Commission of Canada, 2015). Mistrust resulting from harmful colonial practices is compounded by a lack of culturally safe care that meaningfully integrates Indigenous values, practices, and knowledge systems into treatment plans (Kirmayer & Valaskakis, 2009).

Summary of recommendations

Consistent with data exploring Canadian physicians’ experiences in providing care for Indigenous adults with Type 2 diabetes (Crowshoe et al., 2018), provider recommendations in this study included elements of both Indigenous culture and Western medicine, and acknowledgement that at times they may struggle to integrate seemingly distinct paradigms into practice. Some provider quotes reflected a deficit-based lens, occasionally casting patient experiences in an individualistic and judgmental light. At the same time, providers offered specific experiences and interactions that reflected awareness of how historical context and their own intersecting identities of race, ethnicity, and gender influence public health and healthcare practice. They considered social contexts and social determinants of health, such as those stemming from wide-reaching and multigenerational effects of colonization, that increase risk for AD/ADRD and impact patient-provider relationships. As they considered these factors, providers indicated a desire to address systemic challenges and build relationships with patients. They were often uncertain how to do so but remained willing to try.

The self-awareness providers demonstrated, along with their desire to understand historical contexts, values, and experiences of Indigenous communities they serve, represents an important first step toward creating a landscape of cultural safety (Jacklin et al., 2024). For example, providers pointed to sustainable solutions in their recommendations to adapt approaches to dementia care in ways that prioritize community strengths and values. Values such as respect for Elders, reciprocity, and caring for community were viewed as unique strengths of Indigenous cultures. Providers acknowledged the need for culturally relevant interventions, a shift toward wholistic and community health perspectives, and approaches that enhance patient-provider relationships.

To provide sustainable benefits, providers in this study suggested shifting toward relational and contextual models of care that prioritize Indigenous ways of knowing (Jacklin et al., 2015; Racine et al., 2022). For example, providers strongly recommended bolstering support for dementia caregivers, noting that they are often family members taking on caregiving responsibilities in addition to coping with pervasive systemic challenges that negatively impact health. As noted here and in others’ work, when providers conceptualize dementia care through a relational lens, cultural values and practices, such as intergenerational connectedness, can protect and facilitate community health (Jacklin et al., 2015; Racine et al., 2022).

Some recommendations were practical and straightforward, like increasing AD/ADRD resources and awareness. Others were more complex, like strengthening community-based caregiver support, improving patient-provider relationships, and developing culturally relevant approaches to care. Providers also acknowledged that recognizing their assumptions and expanding their frameworks are important elements for overcoming systemic challenges and implementing recommended changes. A process known as knowledge translation can provide a framework for integrating theory and seemingly disparate ways of knowing into practice (Estey et al., 2008). This strategy enables knowledge transfer that is bidirectional, relational, and reciprocal. The exchange of knowledge is the means of building trusting therapeutic relationships over time (Jacklin et al., 2024).

Taken together, approaches that combine decolonization strategies (e.g., knowledge translation) with economic interventions (e.g., unconditional cash transfers) may provide novel, effective, and sustainable solutions that address long-standing systemic challenges to dementia care in Indigenous communities. Such an approach is aligned with provider recommendations and data supporting positive health outcomes. We offer evidence-based resources (see Table S2) to guide healthcare practitioners in their overarching goal of providing optimal dementia care within Indigenous communities. These resources demonstrate how working alongside community members to understand and integrate Indigenous ways of knowing into health promotion materials and healthcare is foundational for efficacy (Webkamigad et al., 2020). Moreover, the process by which such materials are developed is as important as the content, as it has the potential to challenge systemic barriers, mitigate harms related to a colonial legacy of healthcare (Jacklin et al., 2017), and build the capacity necessary to generate and support well-being within Indigenous communities.

Limitations

A primary limitation in this study occurred due to the COVID-19 pandemic. While researchers made IRB-approved adaptations, such as conducting all interviews via telephone or Zoom video, inordinate demands on healthcare providers prevented participation. This limited sample size, sample characteristics, and duration of interviews. The combination of purposive, convenience, and snowball sampling methods may have also introduced bias in participant selection. This analysis focused on two codes in an expansive data set; while not necessarily a limitation, subsequent analyses may offer greater specificity regarding relationships between thematic trends, healthcare policy and systems, and participant-specific contexts and experiences. Lastly, while provider perspectives are incredibly valuable, the results herein should be contextualized within the prioritized experiences of Indigenous people living with dementia and their care partners.

Conclusion

This paper aimed to provide a focused analysis of the challenges faced by dementia healthcare providers working with Indigenous populations and to suggest strategies for improving care outcomes through culturally safe and equitable approaches. Recommendations from providers with wide-ranging experiences and specialties highlighted the need to prioritize Indigenous community strengths and capacities to support sustainable infrastructure for dementia care. We provided practical resources to aid providers in achieving their goals of increasing AD/ADRD awareness and engagement, while bridging gaps to promote Indigenous well-being in communities, policies, and systems.

Supplementary material

Supplementary material is available at The Gerontologist online.

Funding

This work was fully supported by the National Institute on Aging of the National Institutes of Health [grant numbers R56AG062307, R01AG062307]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflicts of interest

None declared.

Data availability

Due to data use agreements and ongoing original work, this data set is not currently available for sharing.

Author contributions

Carey Gleason and Nickolas Lambrou shared co-first authorship. Wayne Warry and Kristen Jacklin shared co-senior authorship. Carey Gleason (Conceptualization [equal], Formal analysis [equal], Funding acquisition [lead], Methodology [supporting], Project administration [supporting], Supervision [lead], Writing—original draft [equal], Writing—review & editing [equal]), Nickolas Lambrou (Conceptualization [equal], Data curation [equal], Formal analysis [lead], Investigation [equal], Methodology [lead], Project administration [equal], Visualization [lead], Writing—original draft [lead], Writing—review & editing [equal]), Melissa Blind (Conceptualization [equal], Data curation [equal], Investigation [equal], Methodology [equal], Project administration [lead], Writing—review & editing [supporting]), Dana Ketcher (Data curation [equal], Formal analysis [equal], Methodology [supporting], Project administration [equal], Writing—review & editing [lead]), Elizabeth Weigler (Conceptualization [supporting], Formal analysis [supporting], Writing—review & editing [supporting]), Melinda Dertinger (Data curation [equal], Formal analysis [equal], Methodology [equal], Software [lead]), January Johnson (Conceptualization [equal], Investigation [equal], Writing—review & editing [supporting]), Alexis Mason (Conceptualization [supporting], Investigation [supporting], Writing—review & editing [supporting]), Susan L. Ninham (Conceptualization [equal], Supervision [equal], Writing—review & editing [equal]), Karen Pitawanakwat (Conceptualization [equal], Investigation [equal], Writing—review & editing [supporting]), Collette Pederson (Conceptualization [equal], Investigation [equal], Writing—review & editing [supporting]), Lois Metoxen Strong (Conceptualization [equal], Investigation [equal], Writing—review & editing [supporting]), Marlene Summers (Conceptualization [equal], Investigation [equal], Writing—review & editing [supporting]), Rhonda Trudeau (Conceptualization [equal], Investigation [equal], Writing—review & editing [supporting]), Wayne Warry (Conceptualization [equal], Funding acquisition [equal], Investigation [equal], Methodology [equal], Supervision [equal], Writing—original draft [supporting], Writing—review & editing [equal]), and Kristen Jacklin (Conceptualization [equal], Funding acquisition [equal], Investigation [equal], Methodology [equal], Supervision [equal], Writing—original draft [supporting], Writing—review & editing [equal])